This last week marked 5 months since I got diagnosed, and things were progressing pretty well until we hit a bump in the road a few weeks ago.

When I was initially diagnosed, we had a catheter-like device (groshong) put into my chest to do blood draws and administer chemo, antibiotics and any other sort of liquid drugs. The device worked well until about 4 weeks ago when I noticed a lump that just kind of grew in size around it in my chest, spanning from the entry site up about 3-4 inches towards my collarbone. The initial theory was that the device had failed or somehow developed a leak, and the most likely explanation was that either some fluid or the chemo I had been getting the week prior had leaked out and killed the tissue off around the device inside my chest. I ended up having surgery to get the device out and dead tissue and chemo cut out while he was in there too. The surgeon sent it in for a biopsy and we ended up finding out a week or two later it was actually a Myeloid Sarcoma. Essentially the AML cells had invaded the tissue in that area and formed a tumor. It’s not a common occurrence, but it can happen when people have AML.

I had a spinal tap here in Sioux City on 7/2 and then we went down to Omaha Tuesday 7/7 and had a PET scan and bone marrow biopsy done. Fortunately, the spinal tap was clear and the PET scan showed that there was only the one sarcoma with just a small part remaining, and no others were found to have developed anywhere – That was a huge positive. The sarcoma doesn’t change the long-term plan, which is still to go get a stem cell transplant in Omaha, but it does change things in the short-term since any remaining parts of the sarcoma need to be treated with chemo. first before we can proceed. Originally, the transplant was supposed to be starting this week, but does need to be pushed off for probably another two months at this point. Luckily, the first couple treatments in this cycle seem to be doing their job, so we’ll just keep our fingers crossed that it continues that way and no other fun surprises pop up between now and September. Outside of that, I am still feeling well physically and mentally for the most part, and have had pretty minimal side effects all around from the chemotherapy. My wife/nurse continues to be awesome on the home front, taking care of me and the kids, and picking up my slack around the house.

We wanted to thank everyone for your continued thoughts, reaching out, cards, texts, and the shirts that a lot of people bought as a show of support; we really appreciate it!